Medical apartheid as English cancer patients are denied life-extending drug

Terminal cancer patients accused Health Secretary of condemning them to death because they are English after the NHS drug rationing body refused to fund a new wonder drug that is available in Scotland.

Patricia Hewitt came under fire from three women with bone cancer after the National Institute for Clinical Excellence rejected calls to supply English patients with the drug Velcade.

The treatment, which can extend the lives of sufferers by up to seven years, was approved for patients in Scotland in October 2004 and is routinely available in the rest of Europe.

The leaked ruling, seen by the Daily Mail, which was not due to be made public until next week, reveals that the drug is more clinically effective than chemotherapy but is not regarded as 'cost effective'.

Velcade is just the latest drug to be rejected in England when it is available in Scotland. Implants for newly diagnosed high grade gliomas - a fast growing form of brain tumour - got the go ahead in Scotland last December, but NICE blocked them in April this year.

The drug Alimta that extends the lives of people with mesothelioma, a cancer of the lining of the lungs, was approved in Scotland in August 2005 and was also rejected by NICE in April.

Cancer charities claimed the latest ruling is clear evidence that NICE is refusing to fund treatments that extend the lives of cancer sufferers and give them valuable time with their families and buy them time while a cure is found.

Since June, the drugs watchdog has refused to endorse five treatments that would extend the lives of people with bowel cancer, leukemia, breast cancer and Alzheimer's disease.

All of them were cheaper than the breast cancer cure Herceptin, which Miss Hewitt intervened to promote earlier this year.

The Velcade ruling is just the latest in a succession of decisions where drugs approved for use in Scotland have been rejected as too expensive for English patients.

Janice Wrigglesworth, 59, from Keighley in West Yorkshire, who has multiple myeloma - cancer of the bones and bone marrow - condemned the decision.

She said: 'It's absolute insanity that Velcade is available in Scotland but not England. Are they saying a Scottish life is worth more than an English life?'

'They are effectively saying to people with incurable diseases: sit down in a darkened room and die.'

Fellow sufferer, midwife Jacky Pickles condemned Miss Hewitt for failing to intervene. She said that after 25 years working in the NHS she will have to give the final years of her life to a Health Service that refuses to save her.

Jacky, 44, whose condition improved when she went on a Velcade drug trial earlier this year, has now been told that she will not get the drug again when her condition deteriorates.

She said: 'I am absolutely devastated by Nice's decision. I believe that Patricia Hewitt has, through the back door of NICE, encouraged a new policy that saves the NHS money by condemning patients to an early death which means they are less of a financial burden both in the short term and the long term.

'If treatment simply improves a patient's quality of life and extends that life three or five years she is not interested. But those years mean everything to cancer patients and their families. Refusing the drug is not tough, it is heartless. It denies us the right to life.'

'I am going back to work at Bradford Royal Infirmary for 12 hours a week in December. I am doing two six hours shifts because that is all I can possibly do physically. I am going to give them the last years of my life. I've got to go and work in a Health Service that won't support me when I most need it. I have given my life to the NHS but it is a system that won't give me something I need to save my life.'

The two women, and their friend Marie Morton confronted Miss Hewitt about their plight at the Labour Party conference last month and handed her a letter urging her to intervene. Last night they announced that they are raising funds to launch legal action to win access to the drug.

Marie, 57, added: 'Patricia Hewitt said she would get back to us when we met her but she has not had the decency to reply to our letter. She just doesn't care because it doesn't affect her.' The Velcade Three, as the women call themselves, have now set up a website (www.velcadethree.co.uk) to raise funds for their legal campaign.

Unless NICE approves a drug, hospitals are not compelled to supply it on the NHS. It is up to individual trusts to decide whether they can afford it.

Velcade costs between £9,000 and £18,000 for a course of treatment, compared with more than £25,000 for Herceptin.

Every year around 4,000 patients are diagnosed with myeloma.

A spokeswoman for Myeloma UK said: 'If this is true the decision represents the single biggest setback in the history of the treatment of myeloma. There are 20,000 people with myeloma in the UK and this will affect every single person at one time or another. Eight people die of myeloma every day.'

NICE covers England but has proved slower in making decisions than its sister organisations the Scottish Medicines Consortium and the All Wales Medicines Strategy Group.

Shadow Health Secretary Andrew Lansley said: 'I had a constituent who fought to get Velcade and he is doing well. Either we have a National Health Service or we don't. In fact it has become a Scottish and a separate English Health Service.'

LibDem spokesman Steve Webb said: 'There cannot be any difference in the clinical effect of the drug North and South of the border and it simply cannot be any different in terms of cost effectiveness. If we place value on an extra few years with families NIce should be asked to do more to take that into account.'

Cancer charities are also concerned that NICE does not put the right value on extending human life.

Avastin and Erbitux, which prolongs life for those with Colorectal Cancer, and Gemzar, which extends life for those with advanced breast cancer have been turned down by NICE because they do not buy enough time for patients - along with four drugs which can slow the onset of dementia and Fludarabine, a drug which extends the lives of patients with leukemia.

Derryn Borley, Cancerbackup Head of Cancer Support Services, said: 'Until this year, only one in eight cancer treatments have been turned down by NICE, but since the beginning of 2006 this has dramatically risen to one in two.

'Many of the treatments being rejected are life-extending treatments. These treatments do not cure but they can give valuable extra time to spend with family and friends which is very important to cancer patients. '

Ian Beaumont, a spokesman for Bowel Cancer UK, said: 'It's wrong that people are playing God. Life is too precious for people to put a price on it like this.

'Who is to say that living for another six months or a year or more is not worth it? You are talking about giving someone more time with their children, their family, another Christmas.

'The UK has been at the forefront of developing these new treatments but we're at the back of the queue when it comes to giving them to patients. People are left to sell their house or car to try and pay for the drugs themselves. People who should be fighting the disease are left fighting bureaucracy.'

A NICE spokeswoman said: 'NICE's expert advisors review all of the evidence on cancer treatments to determine whether they add benefits for patients when compared to other treatments that are already available.

'The benefits that we assess include whether a drug extends life, and whether a drug improves patients' quality of life.'

A Department of Health spokeswoman said they could not comment until the guidance is published. But she claimed that the Scottish and Welsh drug monitoring bodies 'do not cover the area to the same depth or level of transparency and when final NICE guidance is issued it will be used in Wales.'

She claimed that the concerns of the Velcade Three 'are taken seriously' by Miss Hewitt 'and they will receive a response very soon.'